My Incurable Disease Made Sex Incredibly Painful Until I Found the Right Treatment
SELF MAGAZINE / July 27, 2017
I don’t remember the first time sex hurt for me. But I remember how it felt—like sandpaper tearing at my insides. The deeper he went, the worse it was. Afterward, I felt like I'd been punched in the gut. I was only 18, just beginning to figure out my way around sex. Wasn't it supposed to be, at the very least, pleasant?
Sex hurts for more women than we ever talk about, though. In a survey by the Center for Sexual Health Promotion at Indiana University, one-third of the participating women reported feeling pain of some kind the last time they had sex. For most of these women, this isn’t a chronic issue. But for some of them—women like me—sex has been hurting for years.
After a spate of relentless urinary tract infections during my first semester of college in New York, my symptoms clung: burning, constant visits to the bathroom, a deep, persistent ache in my lower back. I spent most nights tossing and turning in bed because of how my bladder felt, even just minutes after a visit to the bathroom, like it was going to burst. Sex left my pelvis raw and inflamed. A slew of urologists and gynecologists grasped at any possible diagnosis: UTI, endometriosis, pelvic inflammatory disorder. All the tests came up negative. One told me it was all in my head.
I was finally diagnosed four years later with the incurable bladder condition interstitial cystitis (IC).
By this time, the pain had burrowed into me, sharpening and deepening, traveling up my back and down my legs like fire. At age 21, I was no longer well enough to work, so I left my life in New York and returned to my California hometown to live with my mother, beginning the circuitous process of trying to get better.
IC is a difficult disease to pin down, one that often looks, in its beginning stages, a lot like a recurrent UTI: For years I was repeatedly prescribed antibiotics for an infection I didn't have. While there is no proven cause, doctors have their hypotheses. Most agree that the disease originates in some kind of injury done to the bladder—from trauma associated with UTIs, surgery, sexual assault, or sports. One common cause that’s thrown around, though, is a series of UTIs.
“Very often women get these infections and they’re not aggressively treated by their doctors. I think the antibiotics they take don’t ever really get rid of the infection, and a low, smoldering infection damages their bladder,” says David Kaufman, M.D., director of New York City’s Central Park Urology.
IC's effects on me were pervasive, but the damage it did to my newly burgeoning sex life was particularly devastating. Sex became fraught with hang-ups, and my first relationship crumbled. Because I had no name for what was wrong, I began to feel like the pain was somehow my fault. I tried to hide it from men as I bounced around from one casual situation to the next. I couldn't always, though: One guy left me curled up on my bed in the middle of the night because he thought I'd “want to be alone” with my pain.
Originally, IC was thought to be a disease that affected middle-aged women, but recently the image of the typical IC patient has changed.
Many women with IC are college students, teenagers, and women on the verge of motherhood. “Medical textbooks show IC patients as being 45-year-old women,” says Dr. Kaufman. “But I’ve always been diagnosing young women, and the vast majority have been in their late 20s and early 30s.”
Pain during sex—and often after—is something patients almost never mention at first, says Kaufman. But every time he asks if they are experiencing pain, the answer is yes. During sex, the tip of the penis bumps up against the bladder over and over, he says. It’s a spot that is extremely tender for most IC patients, and it’s difficult to avoid during sex. The walls of the vagina can also be particularly sensitive, because the muscles grow tense from responding to pain all the time. It becomes a vicious cycle—patients recall sex negatively, and they brace for pain each time intercourse begins.
“Here you have a woman who is kind of pre-conceived to have pain, because she’s expecting intimacy to be painful,” says Stanley Zaslau, M.D., codirector of the Center for Sexual and Voiding Dysfunction at West Virginia University School of Medicine. While some patients don’t experience very much pain during sex, they generally experience it after. Dr. Zaslau calls this “memory pain.”
In a 2016 survey conducted by the Interstitial Cystitis Association (ICA), about 90 percent of patients with IC reported that their condition has kept them from having intimacy with their partner. And that ability—to pleasure a partner, to experience pleasure themselves—may be more important to young women than it is to older patients.
“Folks in their 20s and 30s, people who are in new relationships, they feel it the most,” says Dr. Zaslau. “They’ll feel this responsibility to their partner, so they’ll push through the pain."
At 21 years old, I was one of those younger patients who wasn't ready to give up on intimacy.
When I returned to California, I spent whole days researching the condition, reading The IC Survival Guide from cover to cover, sending away for ayurvedic herbs, brewing horrible smelling teas in the kitchen. I spent my days coordinating appointments and applying for county-run insurance. Just as my friends' lives were opening into new relationships and jobs, mine was getting smaller, more isolated.
And that’s when Andrew appeared: A wiry, 22-year-old with boundless energy who slowed gracefully to match my pace. He had green, watchful eyes, a searching hunger for life, and a bottomless strength that awed me. We began as friends, feeding seagulls along Fisherman's Wharf, driving the back roads of Marin, staying up late talking on his sofa until I’d fall asleep and he’d drape a blanket over me, kissing my forehead. He felt like home.
But then: sex. It hurt like hell. We didn't finish; I rolled away from him.
He wrapped his arms around me and rolled me right back.
He looked at me—naked and humiliated—and I let him.
“You're going to get better,” he said. “I'll help you.”
It was months before we had sex successfully. But Andrew never grew impatient. Instead, he adjusted with such nuance that I sometimes didn't even notice how careful our sex life was. And he supported me while I learned to do what every IC doctor has told me I must learn to do with the condition—manage it.
While there is no cure for the disease, there are different treatments doctors use to help patients manage their symptoms.
Treatments include physical therapy, an “IC diet” that cuts out an extensive list of bladder irritants, and pharmaceuticals that help block the transmission of pain. Among the medications used to treat IC are Elmiron (pentosan polysulfate), tricyclic antidepressants, and antihistamines. “There’s a lot of art to treating the patients,” says Philip Hanno, M.D., a clinical professor of urology at Stanford University and cochair of the Medical Advisory Board of the Interstitial Cystitis Association. “No one medication helps everybody.”
Nine months after I moved home, I finally found a medication that took the edge off: a tricyclic antidepressant. It wasn’t transformative, but it was significant. Its side effects were challenging, but it was worth it. I felt, for the first time in five years, like my body wasn't a cage I wanted to claw my way out of.
The IC diet is, for most patients, the foundation of their IC management. After I was diagnosed, I cut out a litany of foods: alcohol, peanuts, soy, fruits, tea, coffee, juice, sauces, tomatoes, vinegar, smoked meat, yogurt. It hasn’t been scientifically established why any of these foods intensify or trigger IC symptoms, but the ICA has surveyed patients a number of times throughout the last decade, and has concluded that diet helps control many patients’ symptoms. The diet follows no hard rules, though. Some can get away with certain foods that chain women to the toilet for days, and the level of sensitivity can fluctuate in each patient on any given day.
The treatment that most directly improved my sex life, though, was physical therapy for the pelvic floor.
New York–based physical therapist Isa Herrera, M.S.P.T., C.S.C.S., who wrote Ending Female Pain: A Manual, has built a thriving business around this kind of physical therapy.
“Anything that’s connected to that particular part of the body—the bladder—is going to react and cause disharmony,” says Herrera, whose own suffering from pelvic pain led her to this work. The therapy directly targets pain associated with pelvic floor disorder (PFD) and vulvodina, two conditions that can occur alongside IC.
Herrera uses dilators to relax patient’s vaginal muscles, and teaches them exercises they can do to restore muscle function around the vagina, bladder, and pelvis. She usually invites the patient’s partner in to show them how to massage different parts of the patient's pelvis, where muscles have become knotted with tension. These knots often become trigger points in sex, areas of extreme tenderness that, for me, cause sudden shudders of pain during sex—this was the hardest pain to hide with the men I met before Andrew. Through the years, Andrew and I have had to learn how to navigate these together. For me, physical therapy—the most vulnerable massage you could imagine—is the only thing that eases them.
Ten years later, Andrew and I are married with an eight-month-old baby. We're able to have a satisfying sex life, but intercourse is sometimes strained, not nearly as free as it we’d like it to be. I still apologize at times, and Andrew still tells me there is nothing to apologize for. But there have been times that sex has ended in frustration and tears. There have been times that my pain has been a rift we must bridge.
My husband fell in love with me at my worst. And from the beginning, he has known almost instinctively how to deal with the effects of my IC. But I am less graceful. I've talked to women with IC who've said their partners are almost afraid to touch them, and I understand why that would be—there are times I am afraid to be touched myself, recoiling from Andrew's hand on my back. But I try to set aside that instinct and pull him close. I try because he tries, and that trying is the very fabric of our relationship, of the profound trust we've built that keeps us together.